Assessing Financial Toxicity in Pediatric Urology: Validation of a Patient-Reported Outcome Measure (PROM) Tool in Spina Bifida
Rafael Donato Tua-Caraccia, MD, BA1, Leonid Aksenov, MD1, Kevin Tyler Hobbs, MD1, Rohit Tejwani, MD1, Rebecca Fairchild, BS2, Diana Aponte-Colon, MD1, Dandan Chen, PhD3, Bryce Reeve, PhD3, John S. Wiener, MD1, Jonathan Routh, MD, MPH1.
1Division of Urology, Department of Surgery, Duke University Hospital, Durham, NC, USA, 2Duke University School of Medicine, Durham, NC, USA, 3Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Background: There is significant recent attention by the public and policy makers in identifying factors that influence healthcare spending to better understand how such costs impact patients, families, and communities. The concept of “financial toxicity” is the negative therapeutic side effect of healthcare-related expenditure on individuals undergoing medical treatment. Financial toxicity differs from out-of-pocket cost in that it quantifies subjective distress from expenditure rather than absolute expenditure itself. Interest exists in evaluating financial toxicity as a patient-reported outcome measure (PROM) to quantify cost-related strain. Little is known regarding the impact of financial toxicity on patients with congenital conditions, including those of urological interest, such as spina bifida. Urologic complications and their management, are major sources of morbidity and healthcare-related expense for spina bifida patients and families. A better understanding of spina bifida-related financial toxicity (SBFT), including, tools for clinicians to readily identify patients at risk for financial toxicity, are needed. Through the conduction of semi-structured patient/caregiver cognitive interviews the study team identified themes related to the financial burden experienced by patients with spina bifida and their caregiver. These themes from the semi-structured qualitative interviews, expert opinion, literature search and previously published and validated COST-FACIT by DeSouza et al were used to develop spina bifida specific financial toxicity PROM assessment instruments for spina bifida patients and their caretakers. The aim of this study is to validate and employ the SBFT-PROM tool. Methods: Patients with Spina Bifida completed a survey for assessing financial toxicity consisting of 19 questions, and parents of patients with Spina Bifida completed the parent version of the survey with 20 questions. For each version of the survey, we conducted descriptive analyses of survey questions to check data quality, confirmatory factor analysis to examine the factor structure, and assessed the reliability of the surveys. Results: Of the 180 patients, 67% had a household income of less than $50,000. Of the 93 parents, 30% had a household income of less than $50,000. The results of confirmatory factor analyses found that a one-factor model fit the patient survey data well, with a CFI=.96, RSMEA=.08, and SRMR=.05. A one-factor model represents the parent survey data well with a CFI= .93, RSMEA=.12, and SRMR=.09 The factor structures were shown to be reliable with an internal consistency of .94 for the patient survey and .94 for the parent survey. Conclusion: This marks a significant step in the development of a validated financial toxicity PROM tool that may be used to assist with the identification of Spina Bifida patients and caregivers who are at risk of financial toxicity. The use of reliable and internally consistent survey questions may serve to guide clinicians in their counseling and identification of patients who might benefit from early case management/social work intervention.
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